Ever since Lilly started eating, eating and sleeping has been pretty much all she does. At first because the advice was to offer her a chance to eat every time she showed hunger cues, which, because she wasn’t eating and was getting less through her tube, was all the time. And then because once she started eating, it was all she wanted to do! And she was slow at it. Each day, the amount she’s been eating has been picking up. Until yesterday. Yesterday she started acting like the five month old she is. She didn’t want to drink her bottle because she wanted to squirm and look around, or play with her toys, or grab at objects on the coffee table, or drink out of my water bottle instead, or eat off Dave and my plates instead (which we couldn’t let her do because our food required teeth and she doesn’t have any). And she didn’t want to sleep either, so she was cranky and hyper, which also didn’t help the eating situation. So by the end of the day, her intake volume was behind the day before, and her weight was actually down a little over 20 grams. I wondered if I should be concerned that her interest in eating might be waning, but I decided to keep things in perspective. Her volumes and weight are bound to have down days just like she has days where she sleeps better than others. And really we were only talking about a minor decline, not a complete halt or anything of the kind.
And sure enough, today she ate her biggest volume yet and had her biggest weight gain–over 50 grams! That brings her within 10 grams of her weight at the start of her wean. The key seems to be making sure she gets enough stimulation in between eating and sleeping. She is a five month old after all! She needs to play and explore. She needs interesting things to look at and do while she’s drinking her bottles.
Dave and I asked her local feeding therapist how long it would take Lillian to “catch up” to have eating skills that match her age, and she expected it would only take a couple of weeks. Sure enough, Lillian already seems to be improving. When she first started drinking the bottle, a lot dribbled out of her mouth as she sucked, even with a preemie nipple. Now she’s using a size 1 nipple (0-3 month) and dribbling very little. At first, it would take her an hour to finish a 2 ounce bottle. Now she can finish a 4 ounce in 45 minutes if she really puts her mind to it. And this is a little one whose belly couldn’t handle even a 3 ounce feed over 45 minutes through her tube.
As I watch Lillian eat, it makes sense now why the tube feeds didn’t work for her. With her bottle, she drinks for a while, then pushes it away to take a little break. She drinks 60 mLs or so, then takes a pause, then comes back and finishes to rest of the bottle. An hour later she might want another bottle. The tube didn’t allow for any of those kinds of eating patterns–at least not easily. Also, while she’s drinking her bottle, she likes to fling her body around, throw her head back, squirm this way and that. When she was getting her tube feeds we were always trying to keep her as still and upright as possible to keep her stomach from refluxing the feed back up and keep the feeding pump tube from popping loose and spilling both milk and her stomach contents all over the place (which it did many times). She also continues to eat around 200 mL less in a twenty-four hour period than she received through her tube. Yet she’s gaining weight on these volumes (although we need more time to be sure that will continue).
One question in our minds as we started the wean was whether Lillian even really has reflux or if everything we were seeing was all the symptoms of tube feeding and being overfed. That question seems to have been answered over the last couple days–she does still have some reflux. But oh my gosh is it different than what we were seeing up until we started the wean! The reflux we see now is normal baby stuff like spitting up a teaspoon or so when she gets to the end of a meal or has a big burp or gets played with too roughly with a full belly or lays flat on her back for a long time after a big meal. I use the term spit up because it’s appropriate for what happens. While her doctors used the term “spit up” for the huge volumes of vomiting she was having while she was tube feeding, I stopped calling it that because vomiting up most of your stomach contents is not spitting up. It’s vomiting! Lillian spits up maybe twice a day now. She used to vomit five or more times a day on tube feeding. Other than that, the only other reflux symptom we continue to see is some silent reflux (you can hear stomach contents going up and down her esophagus but not coming up) when she has been crying really hard. That seems painful for her, but it doesn’t happen often. But even these symptoms should dissipate as she gets better at eating (swallowing less air, stopping when she’s full) and gets a little older (stronger stomach sphincter and more time upright).